Quote:
Originally Posted by SCourcier
Is there anyone out here who has good information on the actual results that are being obtained by going to Germany or Mexico and being placed in a medical Ketamine coma by Dr. Schwartzman?
I recently read a newspaper article about a young woman who had the treatment and her experience didn't sound all that great, but more alarming was that they were only citing a 40% remission rate at one year!?!?
Unless someone knows of any other possibilities it looks like I either need to go ahead and have the stimulator implanted (trial went OK) or roll the dice with the coma.
After five years on the pills I just cannot see any light at the end of this tunnel.
Any advice appreciated.
|
Hello and Welcome to Neuro Talk!!
I have been to see Dr. S many times. The 4 hour 10 day ketamine didn't work for me. Have you tried that treatment yet? For now I have passed on the coma. My PM, physcologist and family doctor don't think it's worth the risk. Dr. S told me there is a 50/50 chance it will work and he couldn't say how long remission would last or how often I would have to have boosters. Everyone responds to treatments differently. It also depends how advanced your RSD/CRPS is?
Did you talk to Dr. S about the stimulator? He didn't think mine was a good idea and would have told me not to do it had I asked him. I had mine for 3 years and just had it removed last November. My RSD is full body and IMO the stimulator isn't designed for full body. The programmers where never able to get it programmed to really help. It is very sensative to posture and would turn up the stimulation and shock me when I turned my head. When I sat down it would turn off the stimulation. Even with my stimulator I was still on medication.
There is no cure for RSD/CRPS it can be managed. What hasn't worked for me may work for you. It takes time and open communication with your doctors to develope what works for you. I know how you feel about wanting a light at the end of the tunnel. Your light may be learning to accept the changes RSD has caused in your life. I wanted to get back to only my daily vitamin. However, I accepted I need my medications to maintain a quality of life. It's like a diabetics needs their meds, so do those of us who have RSD/CRPS.
I hope you are doing some type of exercise. I water walk and take a arthritis plus class at the Y two sometimes 3 days a week. You are weightless in the water so the pain isn't as bad.
I know at times it all seems so overwhelming and complicated. The nice thing is this site is full of people with helpful information. I hope you find relief soon!!
Sherrie